Unholy Holiness

Vega has been on Maintenance for a week now. This last week I have realized a few things-

1. I absolutely hate steroids. The five days that Vega had to take her Dex were tough. For her and for me and I guess also for Lyra, Alys and Ray. Our days start with crying and end with crying, mainly from Vega but also a lot from me. Vega whines, sobs, cries or at the best of times lies around like this.

Misery on Dex

2. “Kitchen, we have a problem”.
Food is a real issue. I don’t know how Vega’s body can sustain herself with virtually no vegetables or fruit. She pretty much lives off white empty things- white rice, white pasta, white bread. Milk. Butter. Creme fraiche. Sometimes meat or sausages and Hula Hoops. That’s it. She hasn’t touched a pea or carrot in days. As a family we always had a healthy balanced diet. None of my children were ever picky but this eating behaviour is making me lose my mind. We have tried many things; bribery, ignoring, persuasion, ultimatums, making food fun, hiding veg… Nothing worked so far. I find this very tiring. And it has an impact on how we are all eating. I do not do lunch anymore for Alys and myself. Vega demands her lunch as soon as we come back home from Lyra’s school drop off, ie 9am. She did have breakfast only 30 minutes prior, but wants white stuff “right now”! And so we potter along, all day, snacking, never really sitting down to eat. Well there you have it, I hear you say, that is clearly the reason for this total lack of nutritional structure. I have tried. Trust me.

3. This is maintenance, but this is not normal. I feel as if I live a double life, when I take Lyra to school, Vega and Alys strapped in the buggy and on my back our hospital backpack full with enough cytotoxic shit to poison all the water underneath West Dulwich, to be returned to the pharmacy at the Marsden. I walk out of the school gate were Head, Assistant Head and Senco all wish me “a nice day” and I even say “to you too” with an honest smile, while I know that we are off to Hospital to be poked and poisoned. It is outright bizarre if you really think about it. But most days I do not think about it.

4. This is maintenance, but we are not done with it. We are not done with it at all. And I know we will not be done with it by the 28/05/2014 either. Ray and I took out new life insurance a few weeks ago and I had to answer a bunch of questions on the phone, mostly health related. It is one of those questionnaires where you wish you could just say “dude, it’s NO to all of it”. No heart disease, liver disease, medical conditions and so on and on. But while I was answering all those questions I had to think of Vega and how many times she will answer YES to those questions. She will forever be the kid who had cancer. To explain to her husband, her GPs over and over, to her children, insurance brokers, that she is a survivor. And then there is the dreaded, terrifying R word. She bumped her foot on our bed last week, before we started maintenance, and complained about pain. I didn’t see the bump and she didn’t cry right when it happened but just started to complain about pain after. I can not begin to explain to you the terror I felt. The worry of a relapse was so all encompassing I felt sick. The delay between delayed intensification and maintenance, the break in the administration of chemotherapy- had it been to long? What if the cancer had come back and she is displaying signs of bony aches again. I couldn’t sleep or think or anything. The next day we were at the Marsden and our consultant assured us that there would be more signs than just a pain in the foot.
On Monday Vega had her weekly blood count and her counts are way up- neutrophils are at 6.9! Again, it freaked me out. I had to have another re-affirming chat, this time with our oncology nurse Kat, before I could breathe calmly. End of treatment is in May 2014. The highest risk of relapse is within the first three years after treatment ends. Five years after treatment completion the risk of relapse falls significantly. But only ten years after the completion of treatment, with no relapse, will Vega be considered cured.

5. I am feeling down. I wouldn’t go so far to say that I am depressed, I am not the kind I think. But points 1-4 are making my life not exactly a walk in the park. I am stressed almost constantly. I worry about my children a lot. More than other parents do, I think. I worry they will hurt themselves, mainly, or that something bad will happen. This worry about them makes me want to control what is happening. And as you all know, I have three of them, and that means I can not be with every one of them at all times. I have though about going to a therapist. I am not sure though how that would help. I can be quite pragmatic about my fears, can tell myself that falling down is part of growing up, that I have to learn to trust in their abilities. I think I might have sustained some sort of trauma, when Lyra whacked her head hard enough to require stitches when I was a week away from giving birth to Vega. Being pregnant, hormonal and dealing with that has left me with quite some fear it might happen again. All that has been going on with Vega, together with the stress associated with bringing up three children has made my worrying worse. Alys in particular is trying to either drive me to total insanity or cure me by the means of desensitisation. She climbs, falls, whacks and bumps almost constantly. Here is an example of her most recent acquisitions, although the bruise looks much more impressive in real life.

I really wish I could just relax a little. I miss the feeling of ease, that comes with feeling calm and happy. I used to feel like that most of the time but now it seems I have lost this ability completely.

There you have it. A week of maintenance. I feel like I held on to an awful lot of “stuff” these last few months and I so desperately waited for my holy grail. I think it is not quite as holy as they make it out to be.

3 thoughts on “Unholy Holiness

  1. hello sweetie, – I wish there was some magical way i could ease your worries and it seems trite to say i am glad you are sharing them, but i am. the relentlessness continues and continues and continues and some days are just plain shite from beginning to end. I was thinking of you so much last week when i was on retreat – i am 2 years + from diagnosis proper, 1 year nearly post transplant and nearly 3 years of being seriously ill and i am so friggin tired of it all – and that’s just for me – not the suffering of a parent. i constantly realise that i am tired of having a label, explaining, holding it together, being disabled, scouring blood tests, living with the unknown etc etc etc. and oh yes as you so eloquently say – what to do with the R word!!! So i am constantly challenged to find a way of coming to terms with the losses as well as bizarre gains – as in the care of those around and how (as your friends TED talk link) what vulnerability brings.

    I know our stories are different, but they also interweave at times and i ache and feel the pain and frustration with you of how life is never the same – the incomprehensibleness of a journey spanning so many years – ticking every milestone, having a tiny respite before clawing your way through the next onslaught.

    my heart leapt at the news of Vega’s neutrophils – how is her tiny body doing it ? it is – somehow on all the white stuff. you wonder if a therapist may help, maybe it’s a question of whether being deeply understood in all this will provide some inner sustenance that you need – or just knowing you ‘need’ too. last week when i described my journey so far the woman i was seeing (who has worked in oncology) said it sounded torture, like a story of a torture victim. i was taken aback at first n then thought – you know what it bloody was and i dont know how i got through it all. it really helped having her listen and feel with me – to have the space (why i went) to say AGAIN – i’m done – got nothing left and tired of the never ending focus of illness and disability. somehow, i know for me anyway, that i just have to keep voicing that, moaning, crying etc when i need in order to shift through again to a way that allows some peace and energy to go on.

    Vega always touches my heart as do you, and Lyra, Alys and Ray. – vega’s beads are represented on my body map – her courage and smile, barbie in a sick bucket, wobbly legs and deep courage all held in the colourful beads that are painted in my once long hair on my body map.

    your telling of hers, yours, the family’s story reaches to the depths of so many hearts. i wish i could make a break happen for you all, but in the absence of that then wish for some inner peace and trust that you will get through – a day at a time.

    wishing you deep peace in all the unknown and rest,

    loving hugs to you xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


  2. Kathi, it’s no wonder that you worry so much now. Following Vega’s diagnosis, we’ve all become a lot more anxious about things that we might have taken for granted previously. And of course, we worry for Vega and for you, Ray, Lyra and Alys. I personally think that it really does help to talk all your fears and worries through with a professional who is more detached from the situation. Sending you our love. You are all in my thoughts always.


  3. Liebe Kathi,
    das ist hart, sehr hart. Ich finde es mutig, dass du auch für dich überlegst, ob du Hilfe brauchen könntest. Ich denke wie so viele in deinem Freundeskreis aber auch, dass dieser Blog schon ein Schritt in diese Richtung ist, dass du es los werden kannst und du zahlreiche Kommentare bekommst, die sich in vielen Dingen zwar ähneln. Aber dadurch, dass sie doch von so vielen verschiedenen Menschen kommen, sind doch einige Ideen, Hinweise, Zusprüche immer wieder einen kleinen Tacken anders, so dass man sicherlich auch hier viel herausziehen könnte?
    Es ist sicherlich gut, professionelle Hilfe in Anspruch zu nehmen, mit einer “unabhängigen” Person zu sprechen, die das ganze vielleicht von einer anderen Seite beleuchtet und da eine andere Art Aufbauhilfe leisten kann… meine Sorge wäre jetzt allerdings, dass man doch mit recht hohen Erwartungen an diese Person kommt und die Enttäuschung umso größer, wenn man…. na ja, an einen Idioten kommt? Der mit irgendwelchen ganz klassischen Lebensweisheiten daher kommt und nicht zuhört? Wie kommt man an so eine sensible Person, die den Zugang findet?
    Ich finde das echt schwer und ich hoffe, ich belaste dich mit diesen Fragen nicht zu sehr, vielleicht denkst du jetzt auch “Cora, du bist die Idiotin”… aber das sind auch Gedanken, die mir kommen. Entschuldige.
    Du trittst sicherlich die richtige Entscheidung. Denn auch wenn du dich schwach fühlst, du bist eine so starke und tapfere Frau und wirst es auch bleiben! Du packst das, da bin ich mir sicher! Wichtig ist natürlich, dass du für Ray und deine Kinder da bist…. aber du darfst dich einfach nicht dabei vergessen und wenn du die professionelle Hilfe nutzen willst, dann tu es. Und vielleicht hilft es auch dabei, den Alltag wieder zu begrüßen… in dem man ein “Have a nice day” mit voller Freude mit einem “you too” beantwortet.
    Alles alles Liebe für dich… und jede erdenkliche Kraft!


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